Supporting Caregivers -

Transcription

1 Supporting Caregivers - Strategic Partners for Community Living NPA Fall Conference 2016 Tracy Carroll, Center Director - Mercy LIFE of MA/Springfield, MA Jennifer Gaborik-Ovide, Site Director - Riverside PACE/Richmond, VA Jennifer McDuff, LCSW, CSW-G - Care Partners PACE/Asheville, NC Dorothy Ginsberg, Senior Consultant - AEC Consulting/Boulder, CO

2 Objective About this Session Provide information on: Why and how to evaluate caregiver stress Alternatives for reducing stress and supporting caregivers beyond home care Training caregivers to increase confidence and skills Provide the opportunity for interactive audience discussion to: Clarify strategies presented Share other approaches to caregiver support through discussion with the audience

3 Dorothy Ginsberg Caregiver Assessment

4 Why Support Caregivers Isn t the Participant Our Focus? Families have been, and continue to be, both the major coordinators and the providers of everyday long-term care 1. PACE is there to help, not supplant. Caregivers lack training for medical care and caregiving tasks Caregivers may unwittingly compromise the care they provide Often caregivers die before those they are caring for Extend the role of caregiver longer or indefinitely Loss of Caregiver may equal loss of community home 1. R.I. Stone, Long-Term Care for the Elderly with Disabilities: Current Policy, Emerging Trends, and Implications for the Twenty-First Century (New York: Milbank Memorial Fund, 2000).

5 Evaluating Caregiver Stress Why What s stressful from the caregiver s perspective Indicators that a caregiver is approaching burnout Establish a baseline/initiate strategies to prevent/reduce stress Explore supports to prevent burnout Acknowledge caregiver s well being is important/valued

6 Evaluating Caregiver Stress When Initial assessment (baseline or early intervention) 6 month reassessment Changes that have/will increase responsibilities or trigger areas identified as stress factors How Utilize an assessment tool (see examples) Meet with caregiver separately to enable an open discussion

7 Available Assessment Tools C.A.R.E. Tool (Caregivers Aspirations, Realities and Expectations) 1 See Handout ( ) Alzheimer s Association Assessment Tool focuses on Dementia ( ) Zarit Burden Interview tools ( ) AMA Caregiver Self-Assessment Tool ( 1. Authors: Nancy Guberman, Janice Keefe, Pamela Fancey, Daphne Nahmiash & Lucy Barylak

8 Other Caregiver Support Programs National Family Caregiver Support Grant outcome Best Practices Conference Best Practices Booklet Some examples: Telephone Support Groups Men Making Meals Telecare Connections (educational videos on demand) Early-onset Caregiver Support Summer Sizzlers (Youth volunteers)

9 Additional Questions Dorothy Ginsberg Senior PACE Consultant

10 Tracy Carroll Family Meetings and Respite Support

11 Family Meetings Center Visit 30 Day Open House Goals Of Care Identifying Strengths Of Participant And Family Caregiver Self Care

12 Use of Respite Day Center In Home Companion Hours Overnight (Limited/Short Term) Assisted Living Facilities

13 Additional Questions Tracy Carroll, Center Director Mercy LIFE of MA/Springfield, MA

14 Jennifer Gaborik-Ovide Supportive Housing and Community Partnerships

15 Overview Review types of supportive housing options Goals for use of supportive housing Benefits associated with alternate housing options Challenges faced

16 Supportive Housing Options Apartments built out specifically for PACE Adjacent to PACE facility Offsite apartments Shared aide housing within existing senior housing communities Partnership with local housing communities and shared staffing

17 Apartments Built Specifically For PACE Multiple Handicap accessible units One bedroom and studio apartments All units occupied by PACE participants Staffing patterns to optimize participant to staff ratios

18 Sample Floor Plan

19 Shared Aide Housing Use of existing senior housing Concentration of PACE participants in one or several senior housing communities Staffing these buildings with PACE homecare services Serves larger number of participants with fewer staff members required

20 Shared Staffing Partner with local housing communities Shared support staff i.e. social worker

21 Goals For Use Caregiver relief via respite End of life support Alternative to long term placement Community partnerships

22 Respite Allows caregiver respite without the need for participant to be temporarily placed in a facility Allows more flexibility with respite as there are no minimum stays required or other contractual concerns Continuity of care

23 End of Life Support Apartments set up for caregiver and participant Allows multiple family members to rotate time spent with participant Utilization of staff already in place to support participant and family Allows participants with minimal or no family support to be supported through end of life with their PACE family rather than in a nursing facility.

24 Alternative To Long Term Placement Support of participants who would otherwise be placed in a long term nursing facility Avoidance of nursing home allows for participants to continue to live in the least restrictive environment

25 Community Partnerships Shared aide housing uses similar concept The exception is that there are residents in the building that are not PACE participants These residents can become future PACE participants Often the management in these buildings become referral sources

26 Community Partnerships Many of the senior housing communities employ social workers Partnering with these housing communities to share the social worker staff promotes PACE in the community and allows participants and potential participants to remain in the community

27 Benefits Caregiver relief Caregiver support Continued community living Better participant care Staffing optimization

28 Challenges Q:But aren t we running an assisted living? A: No, more like a dormitory Social conflict between participants Monitoring staff Recognizing the difference between housing and PACE

29 Conclusion Supportive housing allows PACE to provide continued support to caregivers and participants When used correctly it helps to reduce long term nursing home placement

30 Additional Questions Jennifer Gaborik-Ovide Senior Site Director - Riverside PACE jennifer.gaborik-ovide@rivhs.com

31 Jennifer McDuff The Savvy Caregiver Program

32 Implementation of the Savvy Caregiver Program CarePartners PACE in Asheville, NC (1 site location) Opened in March 2015 As of 9/1/16 we have 90 participants enrolled Enroll an average of 6 per month Expanded to 2 social workers in May % of our participants have a diagnosis of dementia 70% of our participants have a diagnosis of depression, anxiety, PTSD, or psychosis

33 Savvy Caregiver Program Savvy Caregiver Program is a Project Originating from the Minnesota Family Workshop Designed to train caregivers in basic knowledge, skills, and attitudes to handle caregiving challenges (Hepburn, Lewis, Sherman, & Tornatore, 2003)

34 Savvy Caregiver Program Objectives Acknowledge the disease Make the cognitive shift Develop emotional tolerance Take control Establish a realistic care goal Gauge the care recipient s capabilities Design opportunities for satisfying occupation Become a sleuth

35 Intervention Program Implementation Two class offerings each week One weekday class 230p) One weekend class 10a) Six sessions in workshop cycle Class duration two hours for a total of 12 hours Provision of care available for PACE enrollee Caregiver manual, classroom instruction, group discussion, and supplementary videos

36 Procedures Direct and Indirect Costs Direct Expenses Savvy Caregiver Workshop Video Set $90 Optional online 30-day caregiver workbook $239 Participant Workbook $18/participant Print copies of measurement tools $2/participant Indirect Expenses Use of PACE center facility space PACE center provision of care for persons with dementia during caregiver program hours

37 Data Collection for Quality Improvement Evaluation Assessment Tools for Pre- and Post-testing Revised Center for Epidemiologic Studies Depression Scale (Eaton, Muntaner, Smith, Tien, & Ybarra, 2004) Neuropsychiatric Inventory with Caregiver Distress Scale (Cummings, 2009) Caregiver Well-Being Scale (Tebb, Berg-Weger, & Rubio, 2013) Revised Scale for Caregiving Self-Efficacy (Steffen, McKibbin, Zeiss, & Gallagher-Thompson, 2002)

38 Statistics Neuropsychiatric inventory with caregiver distress scale Overall caregiver distress experienced associated with Behavioral and Psychological Symptoms of Dementia dropped by 12.5% Distress is highest associated with apathy/indifference, depression/dysphoria, irritability/lability Low distress is associated with demonstration of delusions, hallucinations, anxiety, disinhibition, and aberrant motor behaviors

39 Statistics Caregiver well-being scale Greatest difficulties with participating in events in the church or community and getting enough sleep Least difficulties with buying groceries, taking care of personal daily activities, and having adequate housing

40 Statistics Revised Center for Epidemiologic Studies depression scale Overall reduction in scores by 25.6% (depression experienced by the caregivers) Scores > 16 are clinically significant for depression 5 of 10 caregivers had pre-test scores > 16 4 of 10 caregivers had post-test scores >16 Sadness, loss of interest, and fatigue all were more problematic on pre-testing with only sadness testing high on post-testing Appetite, guilty thoughts, and suicidal feelings were the least problematic

41 Statistics Revised scale for caregiving self-efficacy 12.72% improvement in self-efficacy for responding to disruptive behaviors in the person with dementia Self-efficacy for obtaining respite is the most challenging domain

42 Outcomes Understand that caregivers may overestimate abilities of person they provide care for (estimated Allen 8.2% higher) Reduction in depression scores by 25.6 percent

43 Human Experience (Anecdotal Data) Self-care Understanding of disease stages (Allen) Improved abilities Relate to other caregivers, role model Acceptance and recognition Making the most of the situation Desire to have had access to education earlier in the course of disease

44 Resources Cummings, J. L. (2009). Neuropsychiatric inventory: Comprehensive assessment of psychopathology in patients with dementia. Retrieved from Eaton, W. W., Smith, C., Ybarra, M., Muntaner, C., Tien, A. (2004). Center for Epidemiologic Studies Depression Scale: review and revision (CESD and CESD-R). In ME Maruish (Ed.). The Use of Psychological Testing for Treatment Planning and Outcomes Assessment (3rd Ed.), Volume 3: Instruments for Adults, pp Mahwah, NJ: Lawrence Erlbaum Hepburn, K. W., Lewis, M., Sherman, C. W., & Tornatore, J. (2003). The Savvy Caregiver Program: Developing and testing a transportable dementia family caregiver training program. Gerontologist, 43(6), Samia, L. W., Aboueissa, A., & Halloran, J. (2014). The Maine Savvy Caregiver Project : Translating an evidence-based dementia family caregiver program within the RE-AIM Framework. Journal of Gerontological Social Work, 57, doi: / Steffen, A. M., McKibbin, C., Zeiss, A. M., Gallagher-Thompson, D. and Bandura, A.(2002). The revised scale for caregiving self-efficacy: reliability and validity studies. Journals of Gerontology: Psychological Sciences, 57, Tebb, S. S., Berg-Weger, M., & Rubio, D. M. (2013). The caregiver well-being scale: Developing a shortform rapid assessment instrument. Health Social Work, 38 (4), doi: /hsw/hlt019

45 Additional Questions Jenn McDuff, LCSW, CSW-G Social Worker CarePartners PACE 286 Overlook Road Asheville, NC (828)

46 Questions or Comments